Alzheimer's Disease

Transferring Someone to Assisted Living

04/23/2007

Question:

I have been a long time caregiver for an 81yo family member with mild to moderate dementia along with a significant medical history who lives alone in her own house. This person is on 24 hour oxygen and C-Pap and cannot manage her own care. The family takes "shifts" in providing care for her. Her caregivers are burnt out and have discussed moving her in with one of the family or to a facility (limited income). She professes that she will never leave her house! She probably will outlive her caregivers who are 55+. Where do we go from here - any advice?? Thank You!

Answer:

In the 21 years that I have worked with dementia patients and their families there has been only a very small handful of patients who have voiced desire and/or willingness to leave their home. The rest of the patients and families over the years have had to deal with the same difficult situation you're facing where the patient is adamant that they will not leave. Therefore, you're not alone!!!

Here is where families need to recognize and actualize the poor judgment and reasoning abilities that our dementia individuals develop over the course of their condition. The reality is that the patient couldn't exist safely and healthfully without the 24 hour caregivers you have going in to oversee the patient's daily needs. When you have burned out caregivers it then becomes a reasonable and often wise and prudent decision to move forward with a transfer of the patient to a long term care facility.

As I've told so many families over the years the patient often does fine with a move of this sort, once they settle in to the new environment and routines. It's often the families who are struggling with the guilt of making the move, that makes it such a difficult experience. So many families share with me about the relief they feel once they get over the hurdle of making the decision that the move is the best thing for the patient at this time and find a facility that they feel comfortable with. Often when the family is relieved of their full-time caregiving duties they can truly enjoy the visit times spent with the patient.

Will the patient possibly be angry about making such a move? Yes they can be, but if the new room at the nursing home is made home like, and family has quality visits with the patient, often the anger wanes quickly. If there is concern that the patient may try to leave a facility, then look at those facilities that have special secure dementia units. It sounds like your family member has health needs that would be best served in a nursing home, and due to her limited financial means she may need to go on Medicaid in the future to help pay for nursing home costs once her private funds have been spent down. The nursing homes can help families look at the costs of placement and direct families to the proper agency when the time comes to make a Medicaid application, if needed.

If family wants to also consider having the patient move in with another family member, I would encourage everyone to think about the caregiving load that is being placed on the family member who is opening their home. It is a big transition to have someone move in on a full-time basis and the emotional, financial, and physical demands can be overwhelming. Family can investigate to see if the patient qualifies for any local or state assistance for home care or adult day care (examples: Franklin County Senior Options, PASSPORT, Choices, etc.) which would be vital in giving the primary caregiver some relief and assistance. It is important to take care of the caregivers along with the patient, as burned out caregivers will struggle in providing good care.

Work on a united plan amongst the family and keep the lines of communication open as everyone considers these challenging decisions. Good Luck.

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